I have thyroid cancer - potentially triggering for some

[mollyfin 366]

Or my doctor thinks I do, I guess I should say.  The results came back as very high risk but not entirely conclusive (70% chance of cancer or pre-cancer), because OF COURSE I DON'T GET A STRAIGHT ANSWER, given how this has gone so far!  

Looks like follicular variant, which is worse than I'd hoped but better than I'd feared; it's the second-best one to get, it seems.  My endocrinologist is optimistic that I'll be okay.  I have an appointment with the head of the department of endocrine surgery at NYU a month from now.  (I'll be double-checking with GP to see if it's okay to wait this long, but I'm pretty sure it'll be okay.  I'll be taking him my biopsy results anyway so I can get his impressions of them.   He's not a specialist, but he's 84 years old and lives in one of the most crowded cities in the US; he's seen everything at this point!)  

I wish Santa would stop bringing me medical crises for Christmas.  Starting to think I'm on the naughty list.  

 

If anyone out there speaks molecular profiling, I'd love to know what the heck these all mean:

Gene mutations: HRAS   p.Q61K   c.181C>A   

Variant allele frequency: 9%

Gene fusions: negative

Copy number alterations: negative

Gene expression profile: positive

Parathyroid: negative

Medullary/c-cells: negative

 

Obviously I'll be asking my doctors as well, but I'm terrible at being patient so I figured I'd throw it out there.

 

Anxiety-wise, I mean, I'm not doing great.  I don't have the "good" cancer, but my endocrinologist thinks this will turn out to be a relatively low-drama one anyway.  Logically, I know that this could be much worse, and that this is so much better than what I was dealing with last year.  But y'all know how the what-ifs start going around your mind.  Just kinda bouncing around between "Holy shit I have cancer this is my literal worst nightmare" and "Hey, one in six people get cancer at some point, at least it's a generally treatable one instead of the uterine sarcoma they thought you might have last year."  

I mean being me I'm also already worrying about "Shit, I already have trouble losing weight, that's going to be worse without a thyroid," and "This tumor caused me to lose my singing voice; will the surgery give it back or make it worse?" and "How the hell am I going to keep my cat away from me when I'm radioactive when she has a panic attack if I'm in another room?" and all sorts of other dumb things that are less important, but if I weren't the sort of person who worried over things that didn't need worrying about, I wouldn't be here, now would I?  

[bin_tenn 1252]

On the plus side, you acknowledge that the what ifs and other anxiety-induced thought patterns exist, and that they're illogical. I'm sorry you're up against something like this, but there is always a chance that it's not cancerous after all. What really matters is that you and your doctor are on top of it, and you'll be taking care of it. Please let us know how things go, and if we can help. Hang in there, I wish you well!

[NervUs 140]

I'm sorry to hear this, Molly, but glad it is not the most aggressive type. Of course, you are worrying. That is to be expected.

Can you send your biopsy out for a second opinion? It absolutely sucks that you don't have a conclusive answer! Maybe it doesn't even change the treatment, but more knowledge might help the news settle in better. Precancer would be an awesome outcome here!

Agree with Binn-- we are here to help when you need it, especially with the anxiety side of cancer. Waiting through this process is so hard, as you know. I hope this month flies by and that you get your answers in the meantime.

[kj103 22]

I’m sorry to be reading this, but I would definitely have it sent for a second opinion.  My uncle recently went in for a procedure and they discovered a lump on the back of his tongue. They did a biopsy at the local hospital and told him it was almost definitely cancerous.  They referred him to an oncologist at a cancer center. The biopsy was then sent to Duke and after more advanced testing, it was determined to not be cancerous AT ALL.  

 

 

[Bobnnat 491]

I'll add to that. About 20 years ago my gastro diagnosed Barrett's Esophagus. Long story short I got a second opinion at Johns Hopkin and...no Barrett's.

[mlouise 36]

I hope you get a definite answer soon. With that being said, I have 2 different coworkers that have had thyroid cancer. Both were diagnosed about 3-4 years ago and are completely cancer free now. I believe both had procedures to remove it and all is well. 

[mollyfin 366]

I'll be seeing my GP soon and I'll discuss getting a second opinion with him.  NYU is a pretty good hospital, but a second opinion can never hurt.  However, even if this thing isn't cancer, I do want it removed, so it might not be worth it to take the extra time - but if they want to go in and take the whole thyroid immediately I'll seek another opinion first.   

[Leah1976 301]

any update? I was away for a while. I hope all is well Molly!!

[mollyfin 366]

None yet; unfortunately this isn't a great time to get a doctor's appointment, since everyone's on vacation!  Hopefully I'll be able to see my GP in a week or so, although at that point I'll be so close to meeting with the surgeon rescheduling likely won't be on the agenda.  I still want his input, though.  I'm keeping busy for now; a couple of impressive breakdowns but for the most part I'm not nearly as worried as I feel like I should be, if that makes sense?  But the testing done on the sample suggested an extremely low likelihood of recurrence once it's dealt with, and my endocrinologist feels confident that it won't affect my lifespan, so it's just a matter of getting through it.  I'm a bit worried about the surgery - I'm told recovery time is about a week, and as hard as it was dealing with the hysterectomy c-section, I have no idea how I'll go a week without moving my head much!  Also, this thing has destroyed my voice, and I was hoping that I could sing again once it was removed, but it's likely to be permanent damage, unfortunately.  But you never know; I may be lucky.  

[Leah1976 301]

I would love to hear you sing!!!! any videos on youtube?

Thanks for the update, everything will be ok! Keep us posted after your appointment!

[enidoreilley 83]

Again, to add to this - and i know anxiety makes anecdotes easy to ignore when they are positive and impossible to deny when they are negative - but my best friend and another facebook friend had thyroid cancer and both are entirely cancer free. Staying calm is your best friend. I will be thinking about you and am sure everything will be fine, and wish you lots of health.

[PennyPanic 261]

Hugs @mollyfin you got this. 

[PennyPanic 261]

On 12/29/2018 at 12:01 PM, enidoreilley said:

Again, to add to this - and i know anxiety makes anecdotes easy to ignore when they are positive and impossible to deny when they are negative - but my best friend and another facebook friend had thyroid cancer and both are entirely cancer free. Staying calm is your best friend. I will be thinking about you and am sure everything will be fine, and wish you lots of health.

To add to this too...I know 3 people with thyroid cancer as well...all completely healed and disease free...for decades healed and disease free.

[mollyfin 366]

Thanks guys ❤️  I meet with the surgeon in about two weeks, so I'm hoping he has good news for me and agrees with my endocrinologist that it likely only needs surgery, potentially radioactive iodine, and then I'm done with it for the rest of my life.  The testing done on it said the chances of recurrence in this particular tumor (they did some kind of genetic test or something?  I don't really know what, but the results I can comprehend seemed encouraging) is extremely low, so hopefully I just need to get rid of it once and then I'm done with it.  It's probably the follicular variant, I think (again, a lot of these tests are in medical language I don't speak!) which has a pretty high cure rate in younger people (<45).   It's not the one people usually think of as "the good cancer" (that's papillary, the most common; I WOULD get a weird one!) but it's better than the other possibilities by a mile.  

I feel like I should be more anxious about this but unless they're wrong about which type of cancer this is and it turns out to be lymphoma, medullary thyroid cancer or another rare but serious one, I believe my doctor that it's probably not going to be that bad.  With all my wacky estrogen levels, I'm still more worried about other cancers I may get down the line!   

[PennyPanic 261]

Thanks for keeping us posted @mollyfin. You're in my prayers. I'm sure everything will be just fine. Please continue to keep us posted.